On November 30, 2016, I was pleased to host the Developmental Services Housing Forum at the Artscape Sandbox in Toronto with my colleague, the Honourable Chris Ballard, Minister of Housing. There were also four simultaneous regional sessions held across the province that same day in Orangeville, Chatham, Ottawa and Thunder Bay. The session was also webcasted.
Our goal in hosting the forum was simple: to encourage people to share their ideas on how best to remove barriers, improve opportunities and support innovative and inclusive housing for adults with developmental disabilities.
Ontarians seized on this opportunity to make themselves heard on the topic. Across the province you joined us at forums; you participated by hosting your own sessions; by leaving comments on the ministry website; and on Twitter using the hashtag #DSHousingForum. I want to thank all of the individuals, families and service providers for taking the time from your busy professional and personal lives to contribute to this important topic.
You will find here a summary of all of the important ideas, suggestions, and comments that we have heard. The information that we gathered will help to build a foundation for better housing solutions for adults with developmental disabilities.
There is no one-size-fits-all solution to residential supports for those with developmental disabilities. Housing is not just about the bricks and mortar. It is also about identifying solutions that truly meet the unique needs of every individual and we all have a role to play - government, communities, and families.
As a society, we need to work together to expand on innovative ideas whereby people living within their communities are able to achieve greater independence and inclusion.
The release of this summary does not mean that the dialogue on housing solutions is over, in fact, far from it. I encourage people across the province to continue to hold their own discussions and provide feedback to the Ministry at email@example.com.
The Honourable Dr. Helena Jaczek
Minister of Community and Social Services
On Wednesday, November 30, 2016 the Honourable Dr. Helena Jaczek, Minister of Community and Social Services, joined by the Honourable Chris Ballard, Minister of Housing and Minister Responsible for the Poverty Reduction Strategy, held a Developmental Services Housing Forum at the Artscape Sandbox in Toronto. The forum consisted of a morning panel session, which was webcast live, followed by afternoon roundtable discussions. The forum was replicated in locations across Ontario including Chatham, Ottawa, Orangeville and Thunder Bay, where participants watched the live webcast and held roundtable discussions of their own.
Over the last number of years there has been growing need to provide alternative housing options for individuals with developmental disabilities. The purpose of the forum was to build on the work of the Developmental Services Housing Task Force (HTF), and to provide an opportunity for people to share their ideas on how to remove barriers, improve opportunities and support innovative and inclusive housing for adults with developmental disabilities.
The forum was attended by people with developmental disabilities and their families, developmental services agencies and supportive housing experts (both in-person and via online webcast.)
Ontarians with interest in housing for adults with developmental disabilities were invited to participate by watching the forum online, organizing their own discussions using ministry materials, and sharing feedback and ideas via email (DSTransformation.firstname.lastname@example.org), the MCSS website and on Twitter using the hashtag #DSHousingForum.
Opening remarks given by Minister Jaczek touched upon the importance of working together to create sustainable options for individuals to support greater social inclusion for people with developmental disabilities. Minister Ballard also noted that inclusive and suitable housing is a critical step towards ensuring that all Ontarians have the opportunity to realize their full potential.
An Innovation Panel consisting of experts with lived experience in developmental services and housing helped start the forum discussion. Panelists included:
We know that housing is an important contributor to positive health and social outcomes, especially for people with complex needs who may require additional supports, such as people with developmental disabilities. The government is committed to the goal of supporting people with developmental disabilities to live as independently as possible in the community and supporting the full inclusion of Ontarians with developmental disabilities into society. People with developmental disabilities should have a secure and safe place to live, take part in community recreation programs, find employment, go to school and fully participate in society.
The Ministry of Community and Social Services (MCSS) is the lead government ministry responsible for providing services and supports to eligible adults who have a developmental disability. MCSS works with partner ministries, including the Ministry of Housing, Ministry of Education, Ministry of Health and Long-Term Care and the Ministry of Children and Youth Services to improve coordination of services
For more than a decade, MCSS has been working on a broad scale to transform Ontario’s developmental services system to:
Approximately 360 community agencies across the province deliver a range of residential and community participation services and supports. There are 70,000 adults with a developmental disability in Ontario, 42,000 of which receive some type of service from the Ministry of Community and Social Services. Approximately 18,000 individuals currently receive residential supports that include group homes and other supported living arrangements.
The developmental services budget has doubled over the past 12 years and has reached more than $2 billion annually this year. Over 60% of the total developmental services budget is allocated to residential services and supports (2015/16).
Currently there are a range of living options for people with a developmental disability, including:
In 2014, Ontario invested $810 million over three years to expand support for adults with developmental disabilities. Part of this investment will provide new residential supports for about 1,400 adults with developmental disabilities in urgent need by 2017/18.
To help address the growing need for a broader range of housing solutions that offer people more choice and flexibility, the ministry created a Developmental Services Housing Task Force in 2014 to encourage creative, inclusive and cost-effective housing solutions for people with a developmental disability. MCSS has allocated $5.6 million for 18 housing demonstration or research projects recommended by the Task Force. These projects are now providing residential support to 113 individuals.
However, creative solutions are now required to help address the significant demand against limited resources. In 2015/16 there were approximately 14,900 people on the service registry for residential services. Of those, approximately 9,700 are ready to receive residential services now and the remainder may require residential services at some time in the future.
The Minister’s Developmental Services Housing Forum opens the door for discussion and shared learning from within the community. The forum’s goal was to help uncover longer-term residential solutions for adults with developmental disabilities and to meet the needs of the large number of individuals requiring that support.
The forum brought together people with developmental disabilities and their families, representatives from developmental services agencies, supportive housing experts and more to collaborate, share ideas and discuss best practices for finding innovative, inclusive housing solutions for adults with developmental disabilities.
Following the opening remarks and the Innovation Panel discussion, Roundtable Discussions were organized as small table group discussions led by a facilitator/recorder at each table. Participants in each location were provided a programme that included background information on developmental services and a list of discussion questions. The programme and questions were also made available through the Ministry website.
Each group discussed and answered the same series of questions, as follows:
A. What can MCSS and its partners (including but not limited to families, people with developmental disabilities, municipalities, other ministries and agencies funded by other ministries) do to create an environment where people with a developmental disability are supported to live in a wider range of inclusive, community-based housing arrangements?
Please share your personal stories in response to the following questions:
B. When living in one’s family home is the preferred choice, what supports need to be in place so that a person with a developmental disability can remain living at home longer, including what aging caregivers/parents need?
C. What 2-3 recommendations would you like to share about proposed next steps?
Participants were also invited to submit their written responses to the forum discussion questions via email after the event. Those who could not join the forum on November 30, 2016 were encouraged to hold their own “kitchen table” housing forums and submit their feedback to the Ministry for inclusion in this “What We Heard” report and as part of the ongoing dialogue about innovative housing solutions for people with developmental disabilities.
This “What We Heard” report is a synthesis of key themes and various experiences, ideas and solutions that were heard through the different group discussions. It is not meant to capture exact statements made by individual participants, but does recount and summarize views and ideas expressed by those who participated in the discussion. Comments and suggestions are grouped by common themes and discussion topics, but are otherwise included in no particular order.
It is important to note that information included in this report is a reflection of some of the community and partner voices, and is not intended to represent the perspectives of all Ontario communities, or the policy or positions of MCSS. Also, locally identified best practices have not been evaluated by or specifically endorsed by MCSS.
The Roundtable discussions covered a wide range of topics and priorities relating to housing for people with developmental disabilities. However, it must be noted that there was general consensus that there is a need for more and ongoing consultations and input from families and the community. Ongoing and open dialogue was noted as an important step to finding inclusive housing solutions that will cover the unique needs of every individual.
There was healthy debate and discussion on several different issues relating to developmental services and housing, and in the end, the following themes rang most clearly.
Throughout the discussions, participants referenced ongoing information sharing and learning through best practices as a key step towards investing in the future. Whether through learnings gained from housing project partners, individual agencies, individuals in group homes who have been part of effective transitions, or from hearing overall successful stories of change - gaining knowledge and building on what has already been done through shared learning will help shape future support for people with developmental disabilities, their families and caregivers.
People agreed that the focus in these discussions should always remain on the individual - a unique person with unique needs. Regardless of the issue to be tackled, the solution should be people-centred. Advocacy and awareness about the human rights of people with developmental disabilities was identified as essential to ensure that their needs are considered as part of the housing agenda. The statement ‘providing housing is not the same as creating a home’ was articulated at a number of the discussions and in various ways.
There were many references to ministerial collaboration and coordination leading to housing solutions. Taking a ‘strength in numbers’ approach whether with regards to community living or shared spaces, cross-functioning ministries, allies and partnerships with agencies and project partners - the consensus was that it was about making a collective impact through coordination and collaboration. Participant comments included ‘coming together to create new ways of working together’ and ‘needing to work together towards a common goal’.Â .
The need for greater flexibility and increased choice was identified in relation to a number of topics, particularly as a way to combat the one-size-fits-all approach by encouraging creative solutions for residential planning and housing development. Participants also referenced flexibility and choice as ways to increase availability and access to funding, types of supports, access to support staff and agencies and housing options overall.
We heard often about the need for government and its partners to address affordability and accessibility by offering people a range of opportunity and services, for example, by tackling housing costs through builder and developer incentives or ensuring better availability of resources to all in a timely and equitable manner.
Much discussion took place on the need to get away from the current crisis-based model of service. The theme of inclusivity and diversity weaved through many aspects of the developmental services housing discussion, most often with regards to supports for aging caregivers and their adult children with developmental disabilities and best case scenario options for those wanting to transition to supported independent living arrangements.
This next section takes a deeper dive into “What We Heard” during the Roundtable discussions. It includes input from participants at the regional forums and those who participated in their own ‘kitchen table’ forums and/or sent feedback to the Ministry via email following the forum. The information presented below is a synthesis of responses to the discussion questions posed during the Developmental Services Housing Forum. Key themes are highlighted in bold and italics as they appear within the context of these responses.
Q: What can MCSS and its partners (including but not limited to families, people with developmental disabilities, municipalities, other ministries and agencies funded by other ministries) do to create an environment where people with a developmental disability are supported to live in a wider range of inclusive, community-based housing arrangements?
This question encouraged a lot of discussion around the need for collaborative support networks to assist with transitioning between living arrangements. Thinking should revolve around what the individual’s future looks like - what services they would need (i.e. housekeeping, community support workers) and then offering those services to them on an individualized basis. Supports in the form of financial planners, inclusion facilitators and life skills coaches to provide daily living “teaching” and supervision to encourage independent living, were also recommended.
A participant in Ottawa highlighted the need for guidance through information sharing and development of a foundation of best practices, suggesting a central place for individuals and their families to access various frameworks and guidelines on successful models and options for housing arrangements. Many participants agreed that sharing best practices and success models would contribute to the development of sustainable housing arrangements.
“The only way new models will grow is if we share the challenges and successes of emerging models.” - participant in Ottawa
Participants discussed the merits of looking at the collective impact of housing for all communities. It was suggested that there is a need to start thinking wider than just Developmental Services - a label that may exclude people with developmental disabilities from other types of community-focused housing. Segmenting the housing system is not the way to go. One participant noted that the Ministry could look at other systems, like health, that are collectively planning and moving funding into communities.
We heard that families, who have the capability to contribute financially for their adult children with developmental disabilities, still get caught in compliance silos and can’t always access what they need. There is a need for flexibilityin ministry funding so that people have choice, plus more “individualized funding” to allow for maximum flexibility and choice. A common suggestion included the unbundling of funding and bridging of funding so that resources could be used differently and as needed. Overall, there needs to be alternatives to what is seen currently as an “all or nothing” approach.
‘Intentional Communities’ were discussed in depth across the forum with many participants identifying this approach as a good solution. Intentional communities were seen as encouraging of community and gatherings of all kinds of people. Participants debated on whether this living environment supports inclusion or forces segregation. There was suggestion that intentional communities need to be accessible and that people can define that how they want and in a way that works best for them. Also, one participant suggested that an intentional community should celebrate the diversity of the community in order to succeed. Â
Partnerships were also discussed in depth. First, the importance of inter-ministerial partnerships to focus on increased collaboration within government - identified as a “whole of government” approach. A good connection between MCSS and the Ministry of Housing (MHO) is needed to leverage available funding and increase awareness of the needs of people with a developmental disability so that they are included in the housing system and have a share of the voice in Ontario’s Long-Term Affordable Housing Strategy.
Suggestions were also made for increased partnerships with municipalities and regional housing corporations as an important step in creating the right environment for providing inclusive, community-based housing arrangements for people with developmental disabilities. Though participants in regional communities, like Orangeville, noted that there might be more power in their smaller size there was recognition that the development of partnerships and relationships is valuable.
Q: What processes, approaches, and initiatives are working well, and why are they working?
Participants at table discussions across the province identified a number of concrete examples of what processes, approaches and initiatives are working well. Feedback included references to:
The Housing Task Force (HTF) - the impact seen through demonstration projects was said to be helping to change the organizations that are coming together as new allies and partners. The HTF is helping the community see that while over half of the population with a developmental disability has low to moderate needs, some people with a developmental disability have more complex needs, and that we need to understand this more deeply and create new ways of working together. The government’s willingness to pilot new projects and services through the HTF was praised.
“Housing First Committees” were highlighted as a model of success, both as a philosophy and as a functioning committee that focuses on housing first and building services around people. The committee consists of local participants from all different municipal organizations and groups. Their work and attention includes a 10-year plan for housing, addressing mixed income levels, issues of affordable housing and affordable home ownership.
In Toronto, other models identified as most successful were those that tapped into multiple partners(municipality, different ministries, different agencies), leading to the creation of new models and range of supports. These partnership models allow for flexibility with funding and for individuals to think outside the box. Partnerships that bring together Adult Protective Service Workers (APSWs), the Ministry of Health and families were given as an example.
Participants in Ottawa cited intentional mixed communities such as Centretown Citizens, Nepean Housing and Multi-Faith Housing as success models, because they are not just mixed in term of ability or disability, but also economically - tackling affordability. They are person-centred in all aspects from planning to implementation and are built to enhance community supports naturally. Being open to support relationships that view the individual as a person who will evolve in their life, that commitment to the person is why it works.
They also commended United Counties of Prescott-Russell (UCPR) for their innovative service models, particularly Résidence de l’amitié and the residential service at Rockland. Both are privately owned and offer subsidies and 24/7 supports to residents. These were identified as great examples of residential and partnership service models because of how they maximize the use of resources by sharing the support available within an integrated environment. Though individuals served require a certain level of capacity/functioning, support is shared among them all. Association pour l’intégration sociale d’Ottawa (AISO) was also referenced as a transitional housing arrangement model that works well.
Other key takeaways from the discussions include:
“When organizations, health care, everyone involved comes together to offer an integrated approach to service delivery, this enables success.” -participant in Orangeville
Q: What are some barriers that could be removed, and/or have been removed, so that people with a developmental disability have more housing options?
This question opened the floodgates for participants and many different situations, processes and issues were quickly identified as barriers to wider and more inclusive housing options for people with a developmental disability. The following was discussed:
Largely, access to and restricted usage of funding and supports was noted as a serious barrier. Long wait times and delays in assessment for eligibility for Developmental Services are a major obstacle. The system of prioritization with long, centralized wait lists is detrimental because the most intensive needs come to the top and while small amounts of intervention would make a huge difference, most of these situations are not seen until they are in crisis. It was noted that there is a lack of flexibility in the adaptability of the supports - each agency has a limit on the amount of support and the scope of the support they receive and it becomes difficult to accommodate change in a person’s situation or desires over time. For some communities housing is not the main issue, support is the issue.
People felt that if there was more funding available there would be more people living independently or semi-independently, with supports. It was also mentioned that the funding could/should be at the discretion of the parents or caregivers to be used when and where needed, offering more choice. In Orangeville, funding, at various levels, was identified as a major barrier. Starting at the top with a lack of government funding as a whole, to regional funding which was suggested as a key factor for supporting flexibility and creativity when it comes to housing solutions, to individual funding supports, such as Passport which was noted as being insufficient with caps too low.
Lastly, numerous participants suggested the unbundling of supports and flexibility of timelines for use of supports, particularly with relation to housing projects, would remove the stress on families.
“The provision of self-directed, portable, annualized funding could remove the barrier and provide choice for people to live in a home of their own [choosing]. Many aging families who have kept their sons/daughters at home wish to contribute to the future by providing a HOME not HOUSING.” - email submission
The crisis-based system of operation was identified numerous times as a barrier. People feel that the crisis-based system is expensive with little attention given to people who are not in immediate crisis and little in place to prevent crisis.
A Toronto area example that was discussed is the Durham Association of Family Respite Services Housing Task Force project. Many participating families have made big financial decisions and changes in looking at long-term solutions, and are in a position where they need support dollars now, but cannot get them unless they are in crisis. For some, the need isn’t even large (i.e. modest renovations are required so their family member can continue living more independently at home) but funds are not available or easily accessible to make this possible.
“Families feel they face an inequitable and untenable situation because equivalent funds are available for organizations who own property but not for families and yet the capital dollars or supports would make such a difference.” - participant in Toronto
Many participants suggested that there is a need for lifelong case management, a continuum of services from birth to adulthood as well as good collaborativecross-sectorial case management, one that can cross health, social service, housing. They feel that systematically, these departments are not communicating with each other. Aging caregivers and parents of adults with developmental disabilities was also discussed within this context. There is a need to find solutions that consider this lifecycle. A participant suggested that perhaps service providers could operate house assets for the developmental services client as a trustee and run a reverse mortgage long-term to fund housing and supports for the adult child. A participant in Orangeville noted that there is a lack of continuity - people are continuing to report that they are re-telling their stories over and over again to different service providers.
Affordability was discussed as a barrier with relation to the lack of access to supports when families make housing available. Participants felt that there is no adjustment in the systems to create affordability. Portability of rent subsidies was referenced a number of times highlighting the need for subsidies to move with the individual.
Some participants discussed the merits of the City of Toronto’s Open Door Affordable Housing Program - implemented to encourage builders to keep some units below market rate in the city. Others noted that there are not enough incentives for private builders to build affordable housing. In Thunder Bay, it was noted that there is a real lack of housing stock in northern communities. Developmental Services is in competition with all other groups (e.g., people who have low-incomes/ immigrants/ people with mental health and/or addiction concerns) for low-income housing. It was suggested that families should be empowered so that they can take on more on their own. In Ottawa, it was noted that rules around mortgages with banks are very strict and that there is a need to advocate for guardianship.
A suggestion was put forward that perhaps families should be able to apply their Registered Disability Savings Plan (RDSP) to individual needs. Housing grants and rent supplements were discussed as a way to lift people out of poverty with a recommendation that perhaps there could be a partnership grant between the Ministry of Housing and MCSS that would show investment in people with a developmental disability.
Municipalities - challenges with different zoning classifications and bylaws, lack of understanding of Developmental Services in municipal planning departments all mean challenges for creating integrated living solutions. There was much encouragement for more collaboration between municipalities. Inclusionary zoning, whereby developers are required to include a set portion of below-market units aside in new builds, was also discussed as an opportunity to clear this barrier.
Stigma and discrimination based on public perceptions of people with developmental disabilities were identified as barriers to community-based housing. Some participants suggested that the community is often afraid of the “type of individuals” and their issues, and because of this there is rejection and loneliness associated with supported independent living situations. An independent participant suggested that the loneliness of people living on their own, with supportive rooms or with roommates who don’t have a disability, is due to support and design flaws and that support workers need to act as a bridge to build up the individual’s relationships in the community. The majority of participants agreed that public awareness is important and that there is a need for sensitivity when it comes to housing people with developmental disabilities.
Q: What can MCSS and its partners do to support people with a developmental disability who want to transition from living in a group home to more independent living arrangements?
This question was tackled in a number of different ways and forum participants had a lot to say about how MCSS and its partners could work together to better support people with developmental disabilities as they transition between living arrangements.
We heard loud and clear that flexible programming that supports transitions from group homes to supported independent living arrangements was a real necessity. It was suggested that programming must offer individuals real choice and that everyone involved needs to be educated on the options available and how their decisions impact people. Independent living comes with many questions and unknowns that make the decision difficult for families to make. For some families, accessibility to funds to renovate homes could be a better solution.
Participants also discussed the merit of person-centric case managers for individuals who choose, or whose parents/caregivers choose to have them live at home. In these cases, a dedicated support worker could help individuals and families make the right choices for their specific and individual needs. Roundtable discussion participants in Ottawa brought up the development of a ‘transition framework’ to help access alternate, supportive housing. The idea of having people in their life to help with the transition, such as an Independent Planning Facilitator or through Lifetime Networks, was a common point.
In the Chatham session, the importance of information sharing was raised. Suggestions were made to review Housing Task Force data, learnings from partners in housing projects and from agencies/individuals in group homes who have worked through effective transitions to help inform solutions.
Emphasis was also placed on the need for flexible solutions and flexibility with funding. Suggestions that supports and funding could be unbundled so that the focus would stay on outcomes in people’s lives as opposed to funds and budgets were also made, though there was acknowledgement that with this kind of flexibility comes the risk that some level of control could be lost in the bargain. Still people felt that support funding should follow the person as they transition between living arrangements and that housing supports and housing arrangements need to be kept separate.
Again, people spoke about supports and the idea of a “bank” of support workers was mentioned. People also spoke about making funding permanent or (specifically in the case of the LIGHTS program) not limited by time.
There was some more discussion about the different governments linking together to provide funding out of one pot instead of different pots.
“How do you explain to your 35-year-old son or daughter that s\he has to come back home to live with parents as there is no more money for them to carry on in their current, independent living situation?” - email response
It was noted multiple times that taking a people-centred approach to building a community is key. For many, this begins with establishing trust with individuals so that they aren’t fearful of being denied services if they reveal the full complexity of their needs as they transition from group living to supported independent living. Again participants felt that MCSS should be prepared to provide transition coaches, life skills coaches and other services based on individual-centred planning.
At the same time, it has to be recognized that not all individuals can live independently with medical needs and medications, health needs, language limitations, and safety issues, a reality for many who also require 24/7 support and supervision. It was suggested that when someone moves from group home to more independent housing, families and caregivers take the opportunity to engage in conversations about risk and the balance of risk.
In Ottawa, a suggestion was made that community development should start with the education of Developmental Services Workers and that educational programs need to include community development and building of communities as part of the curriculum to help with their future roles.
Participants suggested that funding, Developmental Services assessments, timelines of vacancies, urgent response, and crisis response - all need revising to accommodate the needs of this population. Some participants discussed how people are jumping the system to ‘urgent response’ because it’s the only way to get services, therefore creating a ‘cry wolf’ situation and perpetuating the crisis-driven model. Many identified a need for better entry points to support innovative new approachesto housing and support. An example is being able to account for the supports that families are providing, which saves the system a great deal of money - currently there isn’t a policy in place to do so.
Flexibility was once again brought up in the context of the affordable housing budget and how agencies spend money towards housing solutions. In particular, it was noted that facilitation should be independent and unencumbered by the ministry to encourage community development and research. In particular, suggestions that vacancies be allowed to be banked, that agencies be able to use existing equity to do rent-to-own, that RDSPs be open to use for home ownership and that existing housing stock be sold/repurposed as needed, were all made.
Discussions also touched upon issues of affordability and accessibility as participants reviewed ways to use equity with third-party partners such as builders and financial institutions to help build and finance spaces around people’s needs.
Q: When living in one’s family home is the preferred choice, what supports need to be in place so that a person with a developmental disability can remain living at home longer, including what aging caregivers/parents need?
Many of the same areas of concern and themes were again brought up when the discussion moved towards suggestions for how we could support longer-term family home living arrangements for people with developmental disabilities, when that was the preferred choice.
The suggestion was made that the focus should always be on creating a way to be person-centricin the right environment. More resources need to be available for families to keep people in their homes. Greater access to service and supports through different stages of life would encourage a more natural supported decision making process. MCSS should get out of the bricks and mortar business, focus on providing the support and advocacy and let private developers support the residence.
“The older the caregiver(s) get(s) the more support they will need and therefore the funding has to be geared toward need and not a fixed yearly sum.” - email submission
Specific supports that need to be put in place, including affordable, well-trained inclusion facilitators, life-skills coaches, free or very low cost transportation to and from daily education, medical/dental/banking/shopping trips, as well as volunteer, work and recreational activities, were listed. Individualized, personalized support/assistance addressing the specific needs of the person and family was once again identified as key.
A point was raised that in many cases, the family may choose to take care of ‘house expenses’ (i.e. hydro, taxes, insurance etc.) therefore, financial support would only be required for support or assistance for the individual. At home living was noted as a very affordable way to not only meet the housing needs of individuals/families who wish to choose this approach, but could also be seen as a way to ensure continued community participation in the person’s home and community.
It was suggested that MCSS could do more work within the municipality to help develop ways to keep individuals at home. Suggestions for alternative ways to use funding - whether for physical environment modifications or allowing families to sell their houses and rebuild something that helps them prepare for the future, such as an attached suite - were discussed. Integration across sectors to ensure access to all supports was also suggested.
Cross-ministerial work was again brought up as a key necessity, particularly when reviewing what supports aging parents/caregivers might need. It was noted that the conversation needs to begin at a “community level” so that there can be transparency about who has resources to help. MCSS on its own does not have the expertise in place to assist with the health issues with regards to aging, which means that the Ministry of Health and Long-Term Care needs to be part of the conversation. Discussion revolved around the need to get Health more involved as well as ensure that MCSS and the Ministry of Housing are also communicating with each other.
A participant in the Toronto session pointed out that there is a social housing waitlist as well as the Developmental Services Ontario (DSO) service registry, however what’s needed is more collective strategies. They gave the example of having a service manager partner with community living agencies on local capital projects as a way to ensure an all-inclusive and collaborative approach to the situation.
We also heard lots of discussion on how sharing of information now, leads to good planning and facilitation down the road - something that was noted as necessary for effective service navigation. Once again, the “LIGHTS” project was cited as one to follow as a planning model for creative living solutions. Â Again shared knowledge was referenced, as participants discussed the importance of having pilot projects share best practices, information and proposals.
Lastly, forum participants talked about the need for more access to respite - both places to go and funding to pay for respite at home. This was seen as an important support for families of adult children with developmental disabilities choosing to live at home. Family representatives noted that in many situations it is not a choice, but rather a reality, one that is very limiting in terms of independence. It’s important that we respect the amount of time that caregivers put into their children and strive to be more understanding of the role of the primary caregiver.
Further discussion around the reality of aging parents/caregivers revealed that there are issues of exclusion and isolation for adult children, as parents get older and are not able to do as much. According to one participant, it is not always a preferred choice for the son/daughter to live at home with their aging parents.
Q: What would help families support their adult sons and daughters to live at home or in a house they owned or rented when that is their choice? What supports would the individuals need to take advantage of these options (e.g., supported decision-making, help managing budgets, help to hire and manage workers)? As MCSS is accountable for how funding is used and the quality of services provided, how would the ministry achieve these goals in these living environments?
On this topic, we heard deep concern about the current crisis-based model and the limits that this model poses when it comes to supporting families whose adult sons/daughters with developmental disabilities live at home. We were told that there is concern over parents who are exhausted from care of their young adults - and while respite is part of the issue, what’s also exhausting are all of the processes they have to go through to get resources.
Across the board, it was suggested that resources need to be identified even before there is a crisis, however it’s difficult to access resources when not in crisis. As more families start thinking about succession planning and as parents’ age and families leave a house to their sons or daughters with a disability, supports and assistance are desperately needed to help ease the transition for the individual so that they are able to continue living in the family home legally. Participants also discussed compliance audits and how to create accountability for families without it being burdensome.
We heard that greater flexibility and more options are required within the system - from more funding for Passport to faster service for families so that they are not waiting for resources. A participant noted that prior to the formation of Developmental Services Ontario (DSO), applications had an option for “other” to identify living arrangements. The application for developmental services and supports no longer has this option - “individualized residential” is the choice. Families don’t know where to start to coordinate everything. The ministry needs to make it easier for families by providing flexible options, greater choices and more awareness.
Many forum participants again suggested that “individualized funding” and case management would provide fulfillment in meeting the needs of individuals with developmental disabilities living at home, as well as their families. Supports such as a primary worker or long-term Case Manager with training and experience in life skills would be beneficial in assisting the person and\or their family to reach their goals. It was suggested that the Case Manager could be accountable to MCSS.
Another point made was that jobs would help people feel a sense of belonging in their community with society and local agencies playing an important role in the implementation of a kind, caring, safe and knowledgeable environment. Participants in Chatham suggested highlighting regional champions who have done this already, choosing to live in the family home. They also suggested that agencies ‘just need to ask’ people what type of support they need, and that people will provide their own narrative.
Another suggestion was to create opportunities for family mentorship - to build the individual and family network and reduce demand on the family as they plan for the future. We were told that people need access to an increased pool of trained and supported developmental services professionals who can help with supported decision making, help facilitate circles of trust and other natural supports around the individual to help increase safety and security.
We heard from families that they need to be able to access all of this information easily. An idea put forth by an independent participant is to have one agency that provides coordinated access, or a framework for people to register if they have their own system. There needs to be someone or an organization to help manage funding, coordinated care and so on. It was noted that there truly is no one-size-fits-all approach. Some people would love to have their adult children stay at home if they had enough support money/funds to renovate the family home. And for some individuals with a developmental disability and their parents, it is important to move on to a new situation. Both need to be able to make a good informed decision about what will happen in the future.
One participant said that parents expect to be able to transition their child with a developmental disability to service if they have to go into a long-term care home, however there is a need to educate parents and set realistic expectations. Collaboration with Education is equally important in planning for the next stage and preparing families for the future. It was noted that transitional planning could be improved - that it’s important for families to be educated when the children are younger when they are still entitled to certain things.
“If children are getting 1:1 support in school then they expect to get 1:1 support later on in life and this simply isn’t the case. There is a need to set more realistic expectations and better plan for the transition between school and the future.” - participant in Orangeville
Lastly and once again, respite was identified as a key support for this group. In particular access to respite in the home and the option to take supports to families, was identified as being important in supporting families with adult children with developmental disabilities living in the home. Families want flexibility for respite options and the system needs to be nimble and be able to adapt supports as needed to allow for greater flexibility and choice.
We heard once again that there is a need to develop flexible and collaborative systems- while accountability is needed we still need to allow blurred boundaries for creative solutions to respond.
Other key takeaways from the discussions:
Q: What incentives could be created to encourage private developers to play a greater role in developing housing stock that includes people with a developmental disability?
The discussion about private developers and incentives that would encourage them to invest more in the development of appropriate housing stock led to a number of ideas.
Participant suggestions were as follows.
“There is a need for money to build, versus money for social programs, versus funding for support services.” - participant in Orangeville
Q: What could be done to make it easier for families and communities to support individuals in supported independent living situations?
We heard from forum participants that Supported Independent Living and the process to transition to that situation is one that should be built up over time. Developmental Service agencies should be able to ease the transition from family home to independent living over a period of years. At the moment, this support doesn't kick in until the individual leaves the family home, which makes the transition and learning curve that much more difficult. Participants suggested that while there are some organizations who are figuring out how to do it anyway, this should not be an ‘underground’ approach, but made possible as part of a funded strategy to support people in transition and learning. A suggestion was made that agencies should consider providing transitional housing for those who want to live independently and provide training and a social worker for emotional support. It was noted that while some individuals are able to live independently, they do need emotional support so that they do not feel alone.
An independent participant suggested the formation of a ‘Circle of Support’ that includes family members, community members, and support people who know the individual very well. This inclusive, person-centric approach could help develop opportunities for the individual to be a contributing and participating member of the community they live in. An added benefit would be to have a variety of ages in the support ‘circle’ to encourage continuity.
Consistency with support and regular follow-ups with the person with developmental disabilities was identified as key to ensuring that they are transitioning well into supported independent living situations. Individuals need to know that there is a consistent person who will get to know them and will also make him\herself available to the people closest to them in case there are any issues that need to be resolved. Activities that are inclusive are also important in order for the building of community and to combat issues with loneliness and isolation. It’s important to take a community development approach and support inclusive and diverse communities.
At the Toronto Roundtable discussions, a deep discussion took place around the topic of advocacy for human rights when it comes to easing the living situations for people with developmental disabilities. Continuum for families was again suggested so that when a child is born with a developmental disability, there is communication with family about support and what will be needed and what they need to plan for down the road. Checkpoints from birth to adulthood were identified as key. It was highlighted that Saskatchewan assigns a social worker from birth - a learning that the province could consider.
There is a need to humanize the issues and raise awareness of human rights through education as an important starting point. If people with developmental disabilities are not on the agenda, they need to be put there. Let the sector know what the province needs to demonstrate the human rights of the people with developmental disabilities - help make it a part of the federal agenda. Education and awareness is needed across the board, from developers and builders to corporate CEOs and employers. There is an opportunity to remove the stigma and attitudinal negativity that exists towards people with developmental disabilities. This means the education system must also be totally inclusive so that children are learning from a young age that everyone belongs and has a place in our community.
Overall, there was consensus that the province and ministry need to do even more to support innovation.
Q: What 2-3 recommendations would you like to share about proposed next steps?
Forum participants from across the province made a number of recommendations. The following is a summary of action items and recommendations submitted for consideration:
In summary, the forum served as a strong reminder of the importance of ongoing and open dialogue in finding inclusive housing solutions for adults with developmental disabilities. We heard from participants across Ontario that:
Many of the themes and ideas identified by forum participants validated existing mandates for both the Ministry of Community and Social Services and the Ministry of Housing. The implementation of these actions is still a work in progress and participants’ feedback showed that work must continue, both in these directions and in new ones.
In the feedback, forum participants suggested that this conversation needs to happen annually on a provincial basis, and more regularly on a regional basis, and that it should include private sector, developers and other stakeholders.
As such, the Developmental Services Housing Forum is part of an ongoing dialogue and collaborative effort that seeks to transform longer-term residential solutions for adults with developmental disabilities and meet the needs of the large number of individuals requiring that support. This is just the start of what will be an ongoing discussion.
As well, information about the Housing Task Force and the 18 projects currently underway is available on the ministry’s website.
In closing, we would like to express our thanks to everyone who participated and shared their stories, experiences and ideas, whether through attendance in person, via online webcast or email, website and social media submissions. Your feedback, comments and suggestions are greatly appreciated.
The conversation does not end here. We encourage people with developmental disabilities and their families, developmental services agencies and supportive housing experts to continue to share ideas using the DS Transformation email address (DSTransformation.email@example.com), which acts as a vehicle for ongoing dialogue on this important subject.
As this summary report shows, a great deal of information was gathered through the Housing Forum, which confirms a high level of interest and engagement on this important issue. Everyone’s contribution is important as we build collaborative solutions together to develop innovative and inclusive housing for adults with developmental disabilities.